Views on the Goverment's Role in End-of-Life Planning

Monday, August 10, 2009; 5:35 PM

My Aug. 8 op-ed, "Undue Influence," which discussed a provision of the House health-care reform bill that would pay doctors to counsel Medicare patients on end-of-life issues, triggered an outpouring of e-mail. Clearly, end-of-life planning and the government's role in it are subjects that lots of our readers care about deeply. Many of them took the time to respond with thoughtful and often eloquent comments, as this sampling shows.


I'm a lawyer and liberal, and I voted and worked to get President Obama elected. I've not read the provision, but if it is as you say, it is stupid. I don't do estate planning as a practice, but I've assisted family members, friends and my priest in putting together living wills, etc. Never has a medical professional been involved in the discussions, decisions or counseling. Politically this is simply a bad move because, while it may be well-intentioned, it has given the "loyal opposition" a cudgel to shade the bill as government overreach. Of course the nuance you suggest isn't discussed, the preference being for sound bites and "death panel" talk.

My suggestion: The provision should be removed and/or replaced with funding for seniors to see legal professionals regarding these legal documents. Better yet, why not just have the forms -- and they are for the most part forms -- available at the doctor's office with no mandate for discussion? If you want to pick it up, pick it up, and then, maybe -- if asked -- the doctor can counsel you to discuss with your priest, minister, lawyer, legal aid bureau, wife, kids, siblings, etc. But the only time the doctor really needs be contacted is when the copy of the finished document is brought to him to be placed in the patient's file.


Thank you for your coverage of this certainly delicate bill. I do believe, however, that you underestimate the degree of health illiteracy that exists in this country, which, when present in a Western health environment of seemingly endless technology, makes for an all-too-common default pathway -- of uneducated patients being subjected to life-sustaining medical interventions that a significant number of them would not actually want had these issues been discussed with loved ones and physicians.

Sure, the financial woes in which we find ourselves are significant and need to be addressed, but I'd argue that in this bill, this is an indirect result, with the patient's best interest being the primary concern. Would you also argue that the pay-for-performance impetus of giving incentives to physicians for, say, promoting health through preventive measures such as diet and exercise or medications for high blood pressure or diabetes is in "disconcerting proximity" to the financial relief our health economy would enjoy as a result?

As a physician with a healthy dose of skepticism of corporate pharmaceutical influence, I applaud the attention you brought to the possible heavy-handedness in the bill, but I also hope you elucidate the difference between thoughtful advance care planning through open discourse and education and financial incentives running rampant in other segments of our health-care system.


Consider: If people who are afraid of Section 1233 get their way and such simple prudence isn't incorporated into health-care considerations, America will get more circuses like that multiyear fiasco that surrounded poor Terri Schiavo. Is that really what you prefer? Did that Tomfoolery -- named after former House majority leader Tom DeLay (R-Tex.), of course -- advance the cause of calm, rational thought on end-of-life issues, or did it make the politically and religiously rabid simply nuttier? And, of course, the post-autopsy proof of Schiavo's brain cavity failed to change their minds about anything.

Let's not forget that DeLay (who made much political hay of Schiavo) made private family decisions to let his father die peacefully without life-extension intervention years earlier. Yet people such as DeLay will lie and manipulate when it suits them politically. Your essay plays into the hands of such sociopathic types, manipulating those who aren't rich enough to have an informed family and a lawyer as you do.


I am a hospice nurse with 10 years of experience in the field. I work hard to educate people about good end-of-life care. I read your op-ed, and I'd like to point out some important facts you seem not to have considered.

First, attorneys are not the best people with whom to write your living will and health-care power of attorney. A lawyer has neither the knowledge to discuss medical treatment options and outcomes nor the power to write orders to give medical treatments or withhold them. Your physician is the one who must interpret the documents and write medical orders based on them. Many living wills drawn up by attorneys include phrases such as "extraordinary measures," which are open to interpretation. Most physicians would rather know exactly how you feel about things such as feeding tubes, ventilators, resuscitation and dialysis, and an attorney is not qualified to explain or discuss these details.

Living-will forms are easily available on many websites, and they do not require an attorney or a notary, only a witness. Once completed, one copy of the documents should be placed in your medical record at your primary-care doctor's office and another given to the person to whom you have given your health-care power of attorney. A copy should be brought with you to the hospital any time you go, so the people treating you know your wishes. If you already have a living will drawn up by an attorney, you should bring it in to your health provider's office, explain to your provider what your wishes are, and leave the copy in your chart. If the time comes when you are incapable of making health-care decisions, no one will be calling your lawyer. They'll take you to a hospital and call your doctor.

Your second misconception is that living wills limit care. They are blank documents that allow you to make choices. If you want "everything done to prolong life," you simply check off the boxes that say what you want. No medical provider has any interest (financial or otherwise) in letting you die. Think about this: Doctors and hospitals can only bill insurance for care provided to living patients.

The third misconception regards the consultations between patient and doctor that will be paid for under proposed provisions of the new health reform. In my experience, a thorough discussion on "advance care planning" can take more than an hour, with several family members attending, and many questions and scenarios discussed. Presently, it's not easy for a physician to get reimbursed by insurance for this time spent, and very few physicians take the time to do it. By providing reimbursement for the physician's time, Medicare is creating an incentive for these discussions to happen. I see many, many patients in my local hospital who never had this type of conversation with their physician. Their spouses and families struggle to know what the patients would have wanted and suffer from guilt and grief, unsure of what to do. After, they wonder if they did the right thing. "Informed consent" is a time-honored concept in medical care, and advance-care planning is an important way to give your informed consent for the treatments you want and don't want.

With all the bills you mentioned, which "gently encourage" people to complete advance directives, still less than a third of people have them. There are many barriers, one of which is that physicians lose money if they take the time to engage in thorough discussions of this type. By offering reimbursement, we remove that barrier.

I've worked with dying patients for 10 years, and I cannot see a downside to this provision of the health-care bill. It's good for patients, families, doctors and nurses. I hope you will reconsider your reservations and get behind reimbursement for advanced care planning with a health care provider.


I live in South Florida, the Medicare capital of America, and have been a registered nurse for nearly 30 years. The end-of-life topic is one that I live with each day. Although I would agree that no one wants government to make decisions about this delicate subject, I feel compelled to inform you that your living will offers you little protection from the tortuous end-of-life days that I see my Intensive Care Unit (ICU) patients endure. Nearly 70 percent of all ICU beds are taken up by "do not resuscitate" patients. How is this possible? Living wills are frequently not followed. I have detailed living wills filed in charts, giving strict instructions as to what patients want and don't want, yet they are on life support enduring procedure after procedure in a futile attempt to save them. This is all because one distant family member wants everything done, and the medical profession is so paralyzed by the legal profession that we disregard the patients' wishes.

Not to mention that a living will just does not go far enough. Imagine for a moment that you have Parkinson's disease, arthritis, a bad heart and dementia. You live in a nursing home. You no longer know your family, you wear diapers and are essentially bedbound. Your condition is stable, until you get pneumonia. Would your health-care proxy know enough to let you go? Would they continue treatment, hospitalize you for respiratory failure and only let you go if you suffered cardiac arrest or ended up on a ventilator? Would they continue this cycle every couple of months until you succumbed? Is this a quality of life you would choose to maintain? Does your living will cover these details?

My own father was a case in point. He was 75, diabetic, blind and had heart disease. His leg was amputated above the knee with six surgeries over a period of 12 weeks in the hospital. The surgical site was covered in gangrene. When his other leg needed to come off, I discussed his future with him. He had five doctors, all friends of mine, but none would share his likely future with him. He was essentially stable. I explained to him that neither his current amputation nor the next one could ever heal. He would end up on dialysis soon, and there was already discussion of tube feeding. Lastly, he would end up in a nursing home as a double amputee, blind, on dialysis, with a bad heart. He asked me what would happen then. I explained that every couple of months he would develop some complication such as a wound infection, heart failure or pneumonia and that he would be hospitalized, treated and sent back to the nursing home. He was horrified and asked how long that would go on. My response: Until you tell me that you have had enough. He said he had enough already. We stopped all further treatment, including antibiotics for infection. He died seven weeks later, probably of kidney failure. We stopped the torture and kept him comfortable.

I ran a heart-failure program for 10 years, and this same situation played out over and over. Patients and their families were happy for the truth and felt empowered to make difficult decisions. Without the cards on the table, they felt helpless and victimized.

My complaint is not the government makes our decisions, is that the medical profession does not have the courage to tell patients the truth without fear of legal ramifications. Also, you mentioned you drew up your living will without undue influence. What makes you think that doctors who are incentivized to recommend procedures wouldn't influence your decision to choose what I call the path of suffering? The Medicare reform that I would support would properly reimburse physicians to have these lengthy discussions.

I have a good friend who is a nephrologist. He told me that it is easier and quicker to put a 90-year-old on dialysis rather than have the two-hour discussion to convince the family how inappropriate this may be. He makes a mere $25 for the talk vs. $25,000 for the dialysis annually, because he owns the dialysis center. This is our real health-care crisis: the endless care for the futile situations that I see each day. Until we are ready to discuss these as a nation, I see little chance for reform.

When I hear politicians and reporters cry that we should not ration care, I ask, "Are you kidding me?" All you need do is take a tour of a nursing home to know that something is radically wrong with this system. Patients and families are kept in the dark about their options because it benefits everyone this way. The nursing home is working for occupancy, the doctors for easy decisions and billable procedures. No one is advocating for the patients. The conversation for end-of-life care is complex and time-consuming. Physicians need greater reimbursement for this time.

Here is a test of what's important: Recently, the 92-year-old mother of a friend of mine went to the emergency room with a heart attack. The doctors told the family that she would need bypass surgery and a pacemaker. She had the surgery, suffered a stroke and went to a nursing home, where she died several months later. If the same doctor told the family that she needed $250,000 worth of cardiac care and asked the family for a credit card to cover it, they would have said, "let's keep Mom comfortable." Because this is in the never-never land of Medicare, she had a ridiculous surgery, a high risk for a 92-year-old with little chance for any quality of life afterward. Just because we can do a procedure doesn't mean we should.

The fear and greed in our health-care system is what needs reforming, and scare tactics about rationing care and having the government make your decisions for you do not help in educating the public on the true issues and the delicate decisions that surround end-of-life care. But, having been at the bedside of thousands of suffering patients and grieving families, what do I know?

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